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Old 07-13-2008, 05:49 AM   #1
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VRT, Vestibular Neuritis & Success Stories

After being diagnosed with Vestibular Neuritis and dealing with a few months of constant dizziness, anxiety, and just feeling awful, I recently started Vestibular Rehabilitative Therapy. When I started, the therapist warned me that the exercises would make me dizzier and that I might feel worse at times before starting to feel better. She was right, I definitely feel dizzier since starting but, since starting the exercises, I also feel a lot stronger. I am better able to deal with the dizziness and, for the first time in months, I feel like I am going to learn how to deal with and be able to overcome this thing!

I also think the VRT is great! She actually understands what's going on and is individualizing the exercises to what I should help me build up the stregnth, endurance, and tolerance to be able to eventually do as much as possible. This is the opposite of the doctors who just said put yourself in challenging situations like grocery stores and crowds. The therapist said this will all come, but not until the right time when I've mastered some other exercises and skills first.

Does anyone have any success stories or even things they've done that made them feel better (even if only for a short time) that they want to share. I think it's helpful to hear about how others have learned to deal with and overcome the problems we all share and am hoping someone else has some good news to share!

Thanks!

 
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Old 07-13-2008, 07:45 AM   #2
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Re: VRT, Vestibular Neuritis & Success Stories

Hi there I have the same problem although i am waiting for VRT therapy on the NHS in UK. Could I ask you how your therapist decided which exercises should be tailored for you. For me personally it seems that almost any movements make me dizzier (i feel dizzy anyway without moving).

 
Old 07-13-2008, 08:27 AM   #3
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Re: VRT, Vestibular Neuritis & Success Stories

Quote:
Originally Posted by luisita View Post
Hi there I have the same problem although i am waiting for VRT therapy on the NHS in UK. Could I ask you how your therapist decided which exercises should be tailored for you. For me personally it seems that almost any movements make me dizzier (i feel dizzy anyway without moving).
Unfortunately, I think I know exactly how you feel. I've been dizzy 24/7 since this happenned although feeling a lot stronger since starting VRT. The way I feel now, I think that the dizziness will eventually go away and that I will learn to live with it until that happens.

The VRT therapist is still figuring out what evercises to use with me and how to tailor them -- it's an ongoing process and I think a big piece of it is based on trials, observation, and how you and the VRT therapist feel about everything. The therapist started by having a long talk with me about what I am experiencing, what I can and cannot do, and how it all affects me. She then started by watching me walk, stand with my hands and feet in certain positions (with eyes open and closed), having me try to track things with my eyes, and having me turn my head. She noted everything I could and could not do and what did and did not make me dizzier. She then had me try certain exercises to see how long I could do them and how they affected me.

The great things about the therapy are that I think it is making me physically stronger and that it makes me feel that I am finally able to do something to improve my situation. The tough thing about it is that, for now, every new assessment reminds me of what I still can not do that I was able to easily do before this happenned to me. The other good thing is that there is someone objective who is now watching me and giving me an honest assessment of how things are going. Although I am dizzier than before, I am more stable when walking!

I hope you get into VRT therapy quickly. I do not know how the system works in the UK but know it's nuts here. You first have to convince a doctor to give you a prescription for VRT (it can be a fight). I know that once I got started, I started to feel better (less anxiety) because, for the first time since this happenned, I finally felt like I was dealing with people who understand how hard it is to live with Vestibular nerve damage and who want to help me learn to compensate for it.

Good luck! My hope is that we all wake up feeling good and that we all wake up one day with these nasty symptoms gone forever and can enjoy our lives!

 
Old 07-13-2008, 08:27 AM   #4
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Re: VRT, Vestibular Neuritis & Success Stories

Not meaning to hijack your thread but how was the diagnosis of Vestibular neuritis reached for you? My doctor said that usually, VN comes on VERY strong, with actual "spinning" vertigo acutely, and then things slowly get better over a few weeks, and at worst a few months. My doc said that when people come in to him complaining of slight imbalance or generalized dizziness, especially for months on end, VN is highly unlikely. So I'm curious how your diagnosis was reached. Thanks

Rich

P.S I'm also curious what all of your symptoms are including what your initial symptoms were, and if they evolved or changed. Thanks! I hope some success stories start popping up here for you as well!!

Last edited by Boslee2008; 07-13-2008 at 08:27 AM.

 
Old 07-13-2008, 09:28 AM   #5
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Re: VRT, Vestibular Neuritis & Success Stories

oh yeah, that's classic VN!!! The VRT is important as it will help you compensate. Just keep in mind that if this persists for months and months, and doesn't clear up, consider the possibility that the VN triggered a chronic migraine condition. sounds strange but this has happened many many times to people. I had something similar to you, called labrynthitis, in March of 2007. It took me several months to compensate, which I did, but then suddenly in January of 08, all the dizziness came back x10, and I have been dizzy again for the past 6 months. The diagnosis??? migraine!!! And I never had a migraine in my life. So, keep up with what you are doing as it may just end this thing for you, but try to keep your anxiety down, as that will fuel the fire and keep the dizziness going. Good luck!

Rich

 
Old 07-13-2008, 10:43 AM   #6
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Talking Re: VRT, Vestibular Neuritis & Success Stories

Hi

Dx'd with Lab, then VN, then VN w/BPPV---whole drill lasted 13/14 months---last formal VRT was completed--- 6 yrs ago.

Woke up with Vertigo crawled on floor to bath---then taken to Primary Care Doc who ordered MRI---set-up appt w/ENT Doc---Video-ENG showed Dead right Labyrinth--ENT sked Neurologist---who confirmed Vestibular Injury---started VRT's---helped---but----at 10th/11 month--still dizzy---went to Univ of Penn Balance Center---saw a NEUROTOLOGIST & his team---- redid tests---Dx'd Visual problem & came up with VRT's for correction of vision issues---by 13/14 month---fully compensated...

Used MEP to test for any----recurrence of Vertigo & VRT's to keep the balance centers---tuned up.....

BPPV which is thought to be a by-product of VN---can come back in abt 50%---due to the weakening of the Vestibular Structure by the VN(or so the R&D shows)...

Total time with the junk 14 months---total time without---& 100% compensated---(to date)6 yrs 3 months.....


Last edited by Subs30; 07-13-2008 at 10:44 AM.

 
Old 07-13-2008, 03:00 PM   #7
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Re: VRT, Vestibular Neuritis & Success Stories

Quote:
Originally Posted by Subs30 View Post
Hi

Dx'd with Lab, then VN, then VN w/BPPV---whole drill lasted 13/14 months---last formal VRT was completed--- 6 yrs ago.

Woke up with Vertigo crawled on floor to bath---then taken to Primary Care Doc who ordered MRI---set-up appt w/ENT Doc---Video-ENG showed Dead right Labyrinth--ENT sked Neurologist---who confirmed Vestibular Injury---started VRT's---helped---but----at 10th/11 month--still dizzy---went to Univ of Penn Balance Center---saw a NEUROTOLOGIST & his team---- redid tests---Dx'd Visual problem & came up with VRT's for correction of vision issues---by 13/14 month---fully compensated...

Used MEP to test for any----recurrence of Vertigo & VRT's to keep the balance centers---tuned up.....

BPPV which is thought to be a by-product of VN---can come back in abt 50%---due to the weakening of the Vestibular Structure by the VN(or so the R&D shows)...

Total time with the junk 14 months---total time without---& 100% compensated---(to date)6 yrs 3 months.....

Hearing about you beating beat this crap is awesome! I am psyched for you. I am still learning the language -- what is "MEP." I am trying to learn from the experiences of others and asking the doctors and therapist about everything.

Thanks.

 
Old 07-13-2008, 05:12 PM   #8
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Talking Re: VRT, Vestibular Neuritis & Success Stories

Quote:
Originally Posted by LookingForInsig View Post
Hearing about you beating beat this crap is awesome! I am psyched for you. I am still learning the language -- what is "MEP." I am trying to learn from the experiences of others and asking the doctors and therapist about everything.

Thanks.
Hi

MEP=

Self-treatment of BPPV - Modified Epley Procedure (MEP) - A Radtke et al

Article - [url]http://www.neurology.org/cgi/content/full/63/1/150[/url]
Video - [url]http://www.neurology.org/cgi/content/full/63/1/150/DC1[/url]

1st post on this board "Sticky" Information Archive.....

Also take a look at the Harvard Videos.....

Dr.Rauch's Online Otology Clinic - excellent video clips - Associate Professor Steven D. Rauch, MD

[url]http://www.meei.harvard.edu/patient/rauch.php[/url]

U can beat this---take some time---90% do....they just don't hang out here any longer....can't blame them......the key is a high probability Dx and VRT's with time the brain will redo/recalculate all the balance equations necessary to get back to Batt.....


Last edited by Subs30; 07-13-2008 at 05:54 PM.

 
Old 07-13-2008, 07:46 PM   #9
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Re: VRT, Vestibular Neuritis & Success Stories

Hi Everyone,

I am back reading the Boards because I've been hit with this dreaded "thing" once again.

Soctt will rmemeber me. He was so supportive.

My history is as follows:

Dx'd with VN April 2003....gradual onset over a period or 3-4 days. Never hit with spinning vertigo, just a strong sense of imbalance. Tons of visual problems, head pressure, etc. Interesting to note, I also had a series of recurrent mouth sores, indicating I might have had a herpes type virus at the same time. Anyway, fast forward to Aug '03, went through ENT work-up. ENG coloric test showed 50% loss of balance in right ear. MRI normal. Referred for VT. Therapist examined me as well and felt my responses were typical of "migraine" disease. VT helped a lot, especially when I would walk my dog and close my eyes. Also walked a lot while moving my head up/dpwn, right/ left. People watching me must have though I was a drunken idiot.....

I was also placed on Ativan 1 mg per day which literally gave me back my life. I took that for 18 mos and it took me 18 mos to get off of it so I don't want to go on a benzo again if I can help it. That was NOT fun! After about 1 year I never gave this junk another thought.

Fast forward to June of this year. I am back up in the mountains in damp NE PA and I start feeling a little off balance now and then. It's been about 5weeks now and my right ear feels bloacked, my head feels like it's stuffed with cotton, my nose is stuffy but the most prominent symptom is my vision. It feels like it's bounding around sometimes. I also have a slight headache frequently. When I move my head it feels like jelly inside.

I had migraine headaches before I went through menopause. I rarely get the classic migraine headaches anymore but when I do, I am dizzy for a few days. Now I wondering whether this is migraine or a return of VN? Any thoughts, Subs, Socttsman? I am also considering an allergy problem due to the constant stuffy nose. Basically I feel like my eyes and head are under or filled with fluid or pressure....(had allergy testing done several years ago and nothing much showed up

Rich - questions for you. Can you have "constant" migraine that lasts for weeks at a time? I keep thinking that migraine is episodic.. One other fact that is quite interesting, my hubby has the same thing going on. He thinks his is related to arthritis of his neck.... maybe this is all a virus again. Also want to say that I've have 2 exposures to "conscious sedation" type anesthesia in the past few months. I was given Diprovan (propofol) in April for a colonoscoy and Versed and Diprovan 3 weeks ago for a bunion operation. Any correlation? Maybe just the stress on my body?

I would tell any of you experiencing VN to hang in there. It does get better. I was cured. But, here I am again with the same feelings, just a bit milder than before.

Any thoughts from the experts here would really be appreciated.

Linda

 
Old 07-13-2008, 08:22 PM   #10
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Re: VRT, Vestibular Neuritis & Success Stories

First, I'm sorry you are having problems again, but I AM envious that you got well a first time. I am still on my first time lol, and trying to get out of this. But, anyway, to the question at hand:

my right ear feels bloacked, my head feels like it's stuffed with cotton, my nose is stuffy but the most prominent symptom is my vision. It feels like it's bounding around sometimes. I also have a slight headache frequently. When I move my head it feels like jelly inside.

Rich - questions for you. Can you have "constant" migraine that lasts for weeks at a time? I keep thinking that migraine is episodic.. One other fact that is quite interesting, my hubby has the same thing going on. He thinks his is related to arthritis of his neck.... maybe this is all a virus again. Also want to say that I've have 2 exposures to "conscious sedation" type anesthesia in the past few months. I was given Diprovan (propofol) in April for a colonoscoy and Versed and Diprovan 3 weeks ago for a bunion operation. Any correlation? Maybe just the stress on my body?


First, I think you should get into an office of a good neuro-otologist to look things over, but to me, this seems more appropriate for migraine. And yes, migraine can be CONSTANT and last for forget weeks or even months,...try years lol!!! Usually the painful type migraine is the one that is episodic in nature, but MAV (migraine associated vertigo) can continue 24/7 for years if left untreated. All of the symptoms you describe, the plugged up ear, the vision problems, head pressure, are all seen in migraine. They CAN be seen in allergy too, which is why you should go to the doctor, but they are ALL symptoms of migraine, not just a few of the symptoms. Migraine can affect the blood vessels in and around your face, head, nose, ears, and neck, causing TONS of symptoms......Who knows weather or not the antesthesia was a factor in this, as ANY stress to the body can potentially raise you above your threshold. I often wonder what set me off, so that I can avoid it again. I sometimes go around and around in circles with it. You may never figure out completely what set you off. The most important thing is what to do moving forward. Don't delay. Get this sorted out quickly.........As far as your husband goes, he should get an MRI of his cervical spine. Unless he has high cervical disease (very rare) affecting C1-C2, or a disk abutting the spinal cord anywhere along the cervical spine but most often at C5-C6, it is very unlikley that it is causing his problem. If he is having transient symptoms upon turning or moving his neck, he should probably get an MRA just to make sure he hasn't dissected his vertebral artery (another VERY unlikely senerio). I had both these tests and neither of these situations turned out to be happening to me. The point is, we can speculate all day what is causing a particular problem, but in my view, it really needs to be sorted out, and the cause pinpointed or narrowed down. THEN treatment can be initiated. I am often amazed that 3, 4 years down the road, people are still contemplating their symptoms, and have not had complete and thorough evaluations of their inner ears, necks, and brains, as these are the 3 basic sources of dizziness that can be evaluated for on scans/evaluations. When these are all negative, THAT is when migraine/anxiety come into the picture, as there simply is nothing left lol. But once in a while, someone has miniere's, or cervical vertigo, or a chari malformation, so it's worth while to get the evaluations.

What are your visual symptoms???

Rich

 
Old 07-14-2008, 07:44 AM   #11
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Re: VRT, Vestibular Neuritis & Success Stories

Hi Rich,

My visual symptoms consist mostly of blurred out of focus type vision. Something compared to wearing the wrong prescription in my glasses. Sometimes I have flashing lights when I close my eyes at night for a few minutes. I am not sensitive to bright light and nothing seems to be "moving" in my vision. I have a marked difference in correction between my two eyes so when I go without glasses, depending on whether I am reading or looking in the distance, one eye is always blurred. I have early Age Related Macula Degeneration and early Cataracts. When I was young, I had a problem with a lazy eye and only used one eye at a time. Visual training corrected this and I have binocular vision. I have been spending TONS of time on the computer lately recovering from my foot surgery and using an older model CRT type monitor. I am wondering if this has made me more sensitive.....
I forgot to mention that I also have numbness around and under my eyes when I get this. During my original work-up for this in 2003, the neurologist said she thought this was also migraine and recommended Lexapro. I tried a small dose (5 mg) but found the side effects too stimulating. I was getting "electric shock" type feels in my head, slept all day and was awake all night.

I am about to try some Ativan again for a few days to see how I react to it. I don't feel particularly anxious but I' have an anxious, worrisome personality. Ativan is commonly used as a vistibular suppressant so don't know how to interrupt the response if does make me feel less dizzy. Should I assume that the dizzies are anxiety based if I respond positively? I also just read that Afrin nasal spray can cause dizziness and I've been using it 2X daily for the past month. I realize now my stuffiness could be rebound effect so I discontinued it yesterday. I have also been eating a lot of nuts and chocolate not only because they are good for you but they are so yummy! Going to cut that out as well. Meclizine works well for me at 1/2 the usual dose and I take that when I have to ride down the mountain!

Hubby insists I am having an allergy response. He says he is feeling better over the past few days. He is a very stubborn retired veterinarian and I have great difficulty communicating my concerns with him. He thinks I am too neurotic and hasn't much tolerance for my complaints...

So, my plan for today is to get off the computer. Reading doesn't bother me and I can navigate about the house OK......the recovery from my foot surgery is leaving me housebound and off my feet for a few more weeks. Maybe once I start getting out and about more and walking regularly, I will compensate again.

Hope you are having a good day.

Linda
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Old 07-14-2008, 09:03 AM   #12
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Re: VRT, Vestibular Neuritis & Success Stories

I ALSO have a difficult time with visual focus, and when I close my eyes at night, I sometimes see flashing lights as well, and the only vestibular condition that causes that is MIGRAINE!!

I'm surprised the lexapro gave you electric shock feelings just trying to get onto the pill. Usually that's associated with a withdrawl symptom. When did that symptom start??

Anxiety can keep the migraine cycle going which is why it's important to treat it one way or another. If you just CAN'T do an SSRI no matter how much you try, then you need a BENZO of some kind. I have problems with SSRI's as well but I think that overall, the serotonin is better for the vestibular system so I am going to give a few a try

Rich

 
Old 07-14-2008, 06:02 PM   #13
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Re: VRT, Vestibular Neuritis & Success Stories

Quote:
Originally Posted by Subs30 View Post
Hi

MEP=

Self-treatment of BPPV - Modified Epley Procedure (MEP) - A Radtke et al

Article - [url]http://www.neurology.org/cgi/content/full/63/1/150[/url]
Video - [url]http://www.neurology.org/cgi/content/full/63/1/150/DC1[/url]

1st post on this board "Sticky" Information Archive.....

Also take a look at the Harvard Videos.....

Dr.Rauch's Online Otology Clinic - excellent video clips - Associate Professor Steven D. Rauch, MD

[url]http://www.meei.harvard.edu/patient/rauch.php[/url]

U can beat this---take some time---90% do....they just don't hang out here any longer....can't blame them......the key is a high probability Dx and VRT's with time the brain will redo/recalculate all the balance equations necessary to get back to Batt.....

Thanks for the encouragement and advice! I hope the first 6 years and 3 months have been good to you and hope you have a lot more!!!

 
Old 05-05-2012, 06:46 PM   #14
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Re: VRT, Vestibular Neuritis & Success Stories

I know this is an old thread, and am hoping some of you who posted to it, still receive updates. I was just diagnosed with VN a month ago after suffering for 6 mo.'s while working with my GP, neurologist, and endocrinologist with no success. I was finally referred to an ENT who ran a caloric test on me, and I was found to have only 45% of my vestibular function remaining in my left ear. (Right ear was fine) I'll tell you a bit of my story. In Sept. of 2011, I had surgery to remove a parathyroid gland which had become tumorous and was producing too much PTH (Parathyroid Hormone). The PT gland (you have 4), produce the PTH which controls the level of Calcium in your blood. When one becomes tumorous, it produces way too much PTH resulting in too high of calcium in your bloodstream. Following the surgery, I felt great for about a week. Over the next week, I began feeling poorly and one day woke up feeling dizzy. I did not have the true (spinning) sensation, but I refer to it as light headed when I tilt my head back. I chased all of these symptoms thinking they may be related to the change in calcium levels in my blood. I also have a "rocking motion" when sitting still as well as very mild tremors in my neck/hands/legs/ears and nose. I also have the severe headaches described in the earlier posts. Some days are better than others, but when they're bad, I feel like someone has my head in a vice. I am scheduled to see an otoneurologist next week b/c I want to find someone who specializes in this disorder and can make sure I'm doing the right things to recover. I too have read where VN has gone away in a few days or weeks.....and am relieved to find that others (not glad, just relieved) have had it for many months to over a few years and have worked through it and are doing well. I'd like to see more success stories posted. I'll keep an eye on the list looking for posts/updates and will keep you all posted as to my progress. Take Care All!

 
Old 06-15-2012, 09:54 AM   #15
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Re: VRT, Vestibular Neuritis & Success Stories

Quote:
Originally Posted by VNHOOP View Post
I know this is an old thread, and am hoping some of you who posted to it, still receive updates. I was just diagnosed with VN a month ago after suffering for 6 mo.'s while working with my GP, neurologist, and endocrinologist with no success. I was finally referred to an ENT who ran a caloric test on me, and I was found to have only 45% of my vestibular function remaining in my left ear. (Right ear was fine) I'll tell you a bit of my story. In Sept. of 2011, I had surgery to remove a parathyroid gland which had become tumorous and was producing too much PTH (Parathyroid Hormone). The PT gland (you have 4), produce the PTH which controls the level of Calcium in your blood. When one becomes tumorous, it produces way too much PTH resulting in too high of calcium in your bloodstream. Following the surgery, I felt great for about a week. Over the next week, I began feeling poorly and one day woke up feeling dizzy. I did not have the true (spinning) sensation, but I refer to it as light headed when I tilt my head back. I chased all of these symptoms thinking they may be related to the change in calcium levels in my blood. I also have a "rocking motion" when sitting still as well as very mild tremors in my neck/hands/legs/ears and nose. I also have the severe headaches described in the earlier posts. Some days are better than others, but when they're bad, I feel like someone has my head in a vice. I am scheduled to see an otoneurologist next week b/c I want to find someone who specializes in this disorder and can make sure I'm doing the right things to recover. I too have read where VN has gone away in a few days or weeks.....and am relieved to find that others (not glad, just relieved) have had it for many months to over a few years and have worked through it and are doing well. I'd like to see more success stories posted. I'll keep an eye on the list looking for posts/updates and will keep you all posted as to my progress. Take Care All!
Hi VNHOOP:
How are you doing? Any better? I have VN and it started in March of this year after a bad sinus cold. Unfortunately I still have foggy head feeling and off balance feeling a lot. Did you suffer the foggy head feeling? It's almost like your not here and miss a moment. I hate this feeling and the dizziness with the off feeling really sucks. It does seem that people get over it but that it can take months. My husband said he started feeling this way around December 2011 or January 2012 but he never told me about it! Also, some people at his work were just feeling dizzy about 2 months ago. So I bet we got it from someone at his workplace. Ugh!.....Anyway, I have 25% weakness in my left ear. Do you know if weakness is same at damage? I have heard it's hard to heal on it's own, but I feel I can't give up. Either the brain will compensate, or the ear will be healed. I pray we all can get over this.

 
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